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Long story, long!

Hello I was recently diagnosed with RRMS. My symptoms started spring last year when whole right side of body went numb from neck down and have aches and pains everywhere pretty randomly too. Saw GP who refered me to neurologist and gastro. Gastro did colonoscipy and endoscopy all fine bar 1 small polyp which was removed. Also found low b12 and vit d levels so stated supplements. When I saw neurologist he suggested was anxieties so started on amitriptlyine and pregablin. Arranges c-spine MRI just go rule out anything sinister. MRI was clear, at nxt appt numbness had spread to left side. Arranged NCT but made it clear he thought it was anxieties and was planning a dx of functional neurological disorder. While waiting for NCT had balance issues which deteriorated into vertigo and uncordinated left arm and leg. was admitted to hospital who had no idea what to do with me. Though as I mentioned possible functional dx lost all intrest. Did brain MRI and found probable plaque. Given steroids Sent home no explanations refered back to neuro. 6 wks later still no major improvement but able to walk. Neuro assure me not MS as only 1 lesion. Next MRI with GAD shows new lesions. Finally get to see different neuro not a locum, wants more MRI and LP. Saw him again 2 wks ago and dx MS. I’m so cross with other neuro for making me feel like this was all my fault and doc at hospital who literally lost intrest when I mentioned functional. Just wondered of this is common? Sorry for rambling but hoping somebody understand why I’m so frustrated, although o got dx in the end I feel my mental health has really taken a battering!

Hi, I know how it feels when different neuros tell us different things. ive seen 13 of em, plus a few more baby neuros when in hospital some time back.

The thing to concentrate on now, is the fact that youve got a neuro who knows what hes talking about! Try to draw a mental line under the bad experiences and save your precious energy.

Hope you feel a bit better soon.

luv Pollx

Hello and welcome :slight_smile:

What a nightmare :frowning: I hope you can at least have some faith in the latest neuro?

Decent neuros know that MS doesn’t always result in a positive MRI, especially early on - sounds like the locum docs were being lazy and weren’t prepared to think “outside the box”. Not as it should be :frowning:

I hope things improve now and you get some decent support for your symptoms.

Karen x

Hi thanks for the replies. Yes have a little more faith in the new neurologist! He doesn’t make me cry which is always a good start! Met with MS specialist nurse as well and she has been really supportive. She told me about the MS society. Just so sad that prior to dx or for people unable to get a dx that you can feel so alone. Wish I knew about this site sooner! x

P.s Apologies for the awful grammer and spelling! I was using my phone - predictive text is useless!